Saying No to IVF

Lying on a gurney, staring up at fluorescent hospital lights, I decided: This is not how I want to get pregnant. Nothing had even happened yet. I was waiting to have a hysterosalpingogram (HSG), a procedure to see if my fallopian tubes were blocked.

I was pretty sure they weren’t blocked, as I told my gynecologist a week earlier, when she ordered the test. I had none of the symptoms of blocked fallopian tubes, like pelvic pain or heavy periods. She agreed, but said an HSG was unavoidable if I ever wanted to do in vitro fertilization, or even talk to a fertility specialist about trying it.

I’d already taken hormones to stimulate egg production and tried artificial insemination, to no avail. I wasn’t sure I had the temperament to withstand IVF, and all the injections, money, doctor’s visits and uncertainty it would involve. But I also didn’t have the luxury of rejecting IVF purely because the idea of it turned me off. I was 41 years old, and IVF is what you do when you’re 41, can’t get pregnant and are fortunate enough to have good credit.

According to my doctor, you don’t pursue IVF until you eliminate first-tier reasons for infertility. If fibroids (non-cancerous uterine growths) are the issue, for example, their removal might make IVF unnecessary. We’d done everything on the checklist except for an HSG, including blood work and a fibroid check for me, as well as a sperm count for my husband. Everything looked good “for our age,” doctors told us, using the painful prepositional phrase I’d hear so many times in the coming weeks.

The fact that I couldn’t get pregnant took a while to sink in. I’d spent the previous two decades trying very hard not to get pregnant, being diligent with birth control and, on two occasions, taking Plan B.

I wasn’t so naïve to think I’d magically get pregnant after 40 just by ditching contraception. But somewhere deep down, I clung to that possibility. I was, after all, one half of a healthy couple: I do yoga, I’m vegan. My husband has a great head of hair. I’d also heard just enough encouraging stories to plant the seed of optimism. My ob-gyn told me about a 43-year-old patient having an unplanned pregnancy. And Janet Jackson gave birth at 50, leading CNN to ask, “Is 50 is the new 40 for motherhood?” (The answer is no, CNN.) Jackson didn’t speak publicly about the details, but reproductive experts seemed to agree that it wouldn’t have been possible without IVF and a donor egg.

Explainers

In real life, I didn’t know of anyone my age having an unplanned pregnancy. Quite the opposite: Friends who wanted children were waging uphill battles against biology that sent them tens of thousands of dollars into debt. Some faced miscarriage after miscarriage. Others never got pregnant at all. At first, the women I knew usually held out hope, buoyed by fertility clinics boasting exaggerated success rates. Then they’d come to the crushing realization that it’s really, really hard to get pregnant after 40, especially with your own eggs.

Friends who wanted children were waging uphill battles against biology that sent them tens of thousands of dollars into debt.

IVF is the most common type of assisted reproductive technology (ART), an umbrella term for infertility treatments that involve any removal or handling a woman’s eggs. It’s considered a relatively safe procedure, but there are still risks. In rare cases, women develop ovarian hyperstimulation syndrome after taking injectable hormones, leading to blood clots and kidney failure. And while IVF success rates depend on various factors, age is among the most important. A woman under 35 has a 38 percent chance of a successful pregnancy with ART, according to the Centers for Disease Control and Prevention. By 41, that success rate drops to 14 percent.

I spent my 20s and early 30s building my career and generally enjoying life. I wasn’t ready to start a family, and that didn’t change until I met my husband at 36. A few years later, we started trying to get pregnant. I didn’t feelold, but fertility-wise, I was ancient.

It became apparent that conceiving naturally wasn’t in the cards. Our initial plan — the “let’s just see if it happens!” approach — turned into devastating disappointment month after month. Even now, a few years later, it’s still painful and embarrassing to relive the feelings of helplessness that overtook that time in my life.

While infertility treatments are physically demanding, several studies suggest that the emotional stress of the whole ordeal is the primary reason many couples decide to give up. Even in Sweden and the Netherlands, where treatments are subsidized by the government, researchers found that between one-half and two-thirds of patients stopped the treatments due to “the psychological burden and sense of futility,” according to one report.

Dr. William Hurd, chief medical officer for the American Society for Reproductive Medicine, says that while everyone experiences stress differently, “you can’t underestimate it. The further you go [with fertility treatments], the more stressful it is if it doesn’t work. If it works, you’re done. Everyone is happy. If it doesn’t, some people have lost a major part of their self, what they believe to be their future, and that’s terrifying.”

Before we started trying, I thought that if we didn’t get pregnant easily, I’d just accept it. We’d be that childfree couple who travels. But when it didn’t happen, all I could do was cry.

Before we started trying, I thought that if we didn’t get pregnant easily, I’d just accept it. We’d be that childfree couple who travels. But when it didn’t happen, all I could do was cry. I burst into tears whenever I saw a baby or pregnant woman. My reaction surprised me. It’s probably why I went ahead and did the HSG, even though it didn’t feel quite right.

My husband gently insisted on driving me to the procedure, even after I pointed out that WebMD said I could drive myself. During an HSG, dye is injected into the cervix and an X-ray is taken of the fallopian tubes. According to multiple internet searches I did the night before the procedure, it’s “uncomfortable” and “lasts about five minutes.”

There’s no prep required. You just show up at an imaging center and bring your cervix. I showed up. I got undressed. I lay on the gurney and waited for the radiologist. None of it felt right. None of it felt like me. What if I got up right now? I thought. But I stifled the impulse. Just five minutes.

They were five long minutes. When the mustachioed radiologist I’d never met before crudely inserted a tube into my cervix, I screamed at him to stop. “Are you sure?” he said, peering over his glasses as if he knew better. “Don’t you want to have children?”

Maybe not, I thought. After all, if I can’t endure this brief test, how would I get through childbirth, let alone brave the emotional pains that come with parenthood?

The nurse showed more empathy, suggesting we try again, slower and gentler. I agreed, having already paid the $350. It hurt less the second time. Within a few minutes, the radiologist had inspected the image of my ink-dyed fallopian tubes and concluded that everything was normal. “Good luck,” he said, removing his gloves and leaving the room.

Dizzy with pain, I struggled to get up. After only a few steps, I felt my body start to crumple, and I passed out in a chair in the hallway. I came to moments later with my husband standing next to me and a stranger handing me water. There has to be a better way to do this, I thought.

The fertility specialist, a highly recommended, leader-in-his-field type, was kind but realistic. “The train is leaving the station,” he told us.

A few weeks later, we walked into the Beverly Hills office of a fertility specialist, where I noticed a woman who looked a few years older than I was sitting in the waiting room. Feeling a bit more optimistic about my pregnancy prospects, I let myself relax, as I held my husband’s hand and watched the exotic fish swimming in the giant tank next to us.

The woman, I found out later, was waiting for her daughter.

The doctor, a highly recommended, leader-in-his-field type, was kind but realistic. “The train is leaving the station,” he told us. He didn’t push IVF on us, but he did encourage it. He talked us through the process, somehow making it all sound plausible, even while referencing the dismal success rates he’d jotted down for us.

I noticed on his desk a plaque with the famousSerenity Prayer:

God, grant me the serenity to accept the things I cannot change,Courage to change the things I can,And wisdom to know the difference.

Smart plaque for a fertility specialist, I thought.

The more he talked, the closer I moved toward acceptance. IVF wasn’t for me.

Of course, it’s so personal. Some people have unlimited funds and a high tolerance for low odds. Hurd emphasized the importance of having a plan before venturing into the world of infertility treatments, and not making IVF the be-all end-all: “If it does work, you’ll have a baby. But if it doesn’t, don’t look at this as a cliff. Look at this as the next step before something else.”

New procedures are on the horizon. Minimal stimulation IVF, one option with potential, is less invasive than traditional IVF and involves fewer hormones. Still, it’s only been tested in small studies. For those open to it, there’s also adoption, an avenue that some people prefer to pursue in tandem with IVF, Hurd says.

After my HSG, as the nurse cleaned up and I pulled myself together, the X-ray image of my fallopian tubes remained on a monitor to my right. “Is that me?” I asked the nurse. She nodded. I’d never seen my fallopian tubes before. They looked nothing like the clunky textbook diagram I remembered from health class. Instead, they were delicate: Tiny threads with teardrop ovaries daintily hung like a fragile chandelier. My eyes filled with tears. “They’re beautiful,” I whispered. She smiled.

I had to trust my instincts. There were other ways to have a family. I felt, for the first time in a while, the tiniest sliver of hope. My body wasn’t broken. It was just 41.

Cole Kazdin is a writer and Emmy-winning television journalist living in Los Angeles. She is a regular contributor to Vice, has written for the New York Times and Refinery29 and has been featured on NPR as part of the Moth Radio Hour.

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Thank you for this during my dark late hour, in years and time of night. I have been struggling trying to decide to do ivf or not and reading your story gave me a little more peace about my feelings of not wanting to. Of course I’d love to be a mother, but all the risk and stress may not be what everyone’s called to pursue. It’s still hard though because we aren’t sure yet either way.

I feel the same. My husband and I have been trying since we got married 4 years ago. He has since had cancer and is now doing very well. When I had the HSG , I felt exactly the same. Invasive , uncomfortable. I just don’t have the strength to go through months of uncertainty and meds and treatment. We are now pursuing adoption and feel very happy with our decision.
Being a biological mum and dad doesn’t matter to us. We are thrilled to become parents regardless.
Ps I’m 43 xx

I’m 32 with a KS husband. We found out he has just enough sperm for IVF. Our clinic is in San Fran where the only doctor we trust can perform the procedure on him first then walk upstairs where my eggs will be waiting his sperm. $26,000 all together. That’s after we did the $8,400 mapping. We’re from Maine so we’ll have to do IVF here then time it right when we fly out. After reading this piece I feel more confident in saying no to this, but I’m going to say yes instead and give it a go. Thanks for your story!

Did it work? I hope so. I’ll be starting iui on the 20th. I’m praying & hoping I get pregnant on first try!! I have an occluded right Fallopian tube..I’m 39.5 years old. Have been trying for over a year naturally although I was pregnant in 2018 but terminated. I never thought it’d be so difficult once I decided to have another child..because in the past it wasn’t difficult as I have older children. IVF is my last resort but I will not give up!! I believe my child is meant to be here and it will take determination. I badly want to have another child

The best wishes for your iui procedure this 20th. I hope a positive. I will follow your steps with an iui. My first try with iui will be in November after getting a gallstone surgery the upcoming weeks. I hope it works on the 1st try to you and me.

Thanks for sharing your story. I have gone through 2 ivf in Mexico. First one negative, second had a blighted ovum at 3 months of pregnancy 🙁 Now will give iui i a try but today had a HSG in California. Thought the worst. Went to appointment but everything came better than expected. Took an advil 1 hour before procedure. Doctor says everything looks good. The only issue is my husband sperm motility that is lower compared with last year results. I am 37 years old and husband is turning 40 by the end of this month. I am nervous with my next step. Reading your story helps me through my journey.

Thank you so much for sharing. I´m 34, I have endometriosis and just had an ectopic pregnancy, lost one fallopian tube. Due to my endo, my “fertility numbers” are the ones of a 39 years old. I can try again to get pregnant and I will, but if it doesn´t happen and I have another ectopic, my only chance would be IVF. And eventhough my story is different, because I already have one child, it still makes me sad to think that we won´t be able to have another baby, as we planned. But IVF isn´t for me either. I can´t imagine getting pregnant that way. No, I can imagine it, and it feels so wrong in my body, that I know I don´t want it. I just don´t want to feel regret later. Knowing that others feel the same way, helps me feel better about it.

Read this next

For people with irritable bowel syndrome, it’s common to hear that symptoms such as cramping, alternating diarrhea and constipation, and bloating are “all in their head.” In the case of IBS, there’s actually some truth to this.

It’s not that their symptoms don’t exist. IBS is a very real disorder, and managing its physical toll often becomes an all-consuming effort. The litany of concerns that accompany so many activities — always scouting the closest bathroom, making sure you can reach it in time, farting in public — keeps many people with IBS from having a social life.

Yet according to some experts, IBS is not solely about what’s going on in the digestive system; rather, the brain exacerbates the condition. “IBS is a disorder of brain-gut dysregulation,” explains GI psychologist Sarah Kinsinger, who is also co-chair of the psychogastroenterology section of the Rome Foundation. Accordingly, addressing the “brain” side of IBS through cognitive behavioral therapy with a trained psychologist may help decrease both the anxiety that’s often associated with the disorder and its physical symptoms.

“CBT really should be the first-line treatment for people with IBS. It’s the treatment with by far the most empirical support, and when done well, it can be curative,” says Melissa Hunt, associate director of clinical training in the psychology department at the University of Pennsylvania.

In a series of trialspublished last year, researchers in the UK compared the standard treatment for IBS (typically diet and lifestyle modifications and/or medication) with eight sessions of CBT delivered over the phone or online. Before and after the trials, participants answered questionnaires designed to measure their anxiety, depression and ability to cope with their illness. Two years after the trials, 71 percent of the phone-CBT group and 63 percent of the online-CBT group reported clinically significant changes in their IBS symptoms. Meanwhile, less than half of the standard-treatment group reported such an improvement. Those who did CBT also exhibited lower levels of anxiety and depression and higher coping ability than other participants.

In an earlier meta-analysis (a study of studies), published in 2018 in the Journal of Gastrointestinal and Liver Diseases, a different team of researchers also found that CBT appeared to reduce both psychosocial distress and the severity of IBS symptoms, with a greater effect on the physical symptoms than on the mental ones.

Explainers

The brain-gut connection

How this happens is not completely clear at this point, but it’s believed to have something to do with how the gut and brain communicate.

“IBS is thought to be a disorder of centralized pain processing,” Hunt explains. “There is miscommunication between the pain centers in the brain and the nerves in the gut. In people with IBS, pain signaling gets inappropriately amplified.” Discomfort that wouldn’t even register in the majority of people feels like being stabbed in the gut to a person with IBS. “The best way to address that is to find ways to help reduce pain signaling, and that’s with a psychologist,” Hunt says.

CBT for IBS entails learning relaxation techniques, such as diaphragmatic breathing and progressive muscle relaxation, which help reduce the “volume” of the pain signals by activating the parasympathetic nervous system, i.e., the body’s “rest and digest” response. “This can also lead to increased blood flow and oxygen to the digestive system, which helps the GI tract to function in a more rhythmic way,” says Kinsinger, who is also an associate professor at Chicago’s Loyola University Medical Center.

CBT also involves thought restructuring. IBS can cause a cycle of worry: Worrying about symptoms leads to being hyperfocused on the slightest hint of any symptom, which increases anxiety, which aggravates symptoms. People with IBS also often catastrophize, meaning they assume the worst will happen (“If I have an accident at work, I’ll get fired and never get another job”), develop social anxiety and become withdrawn. CBT addresses these issues by shifting attention away from IBS symptoms and using exposure therapy to help people gradually engage in more activities outside their homes.

Additionally, using CBT, people with IBS learn to identify and change dysfunctional ways of thinking. For example, consider someone with school-aged children who asks their spouse to attend all school functions because they’re afraid of farting in a room with other parents, which would inevitably cause humiliation and might even make people think they’re disgusting A therapist might ask them how often they notice bodily noises from other people to help them realize that we’re a lot more cognizant of our own bodily functions than other people are. “In other words, we identify the catastrophic beliefs and then search for evidence supporting them or not,” Hunt says.

CBT is a skills-based, goal-oriented approach to treating mental disorders that emerged in the mid-20th century. All CBT programs share the same underlying goal of helping patients identify and modify negative or unhelpful thought patterns and behaviors. “It teaches patients techniques that they can then implement on their own.” says Kinsinger. “It can be done pretty efficiently, depending how motivated and receptive one is to learning these skills.” But over time, customized versions of CBT have been developed for specific conditions including insomnia, schizophrenia and IBS. Different versions of CBT use different techniques, such as role-playing, exposure therapy and relaxation exercises, and vary in length. On average, CBT for IBS lasts between 4 and 10 sessions in total.

Jeffrey Lackner, professor and chief of the division of behavioral medicine at the University at Buffalo, SUNY, says their program is structured like a course: “You learn a specific skill to manage your GI symptoms, process information differently or respond to stress in a less extreme way. Then you practice that skill in session before using it in the real world.” Often therapists also give patients homework to fine-tune the skills they learn. They come out of CBT with a toolbox of techniques to manage the day-to-day burden of IBS.

Some people with IBS do CBT on their own, using self-help books, online materials or apps without ever seeing a therapist. “Not many psychologists are trained to treat GI disorders specifically, so physicians don’t often have anyone to refer patients to,” Kinsinger says. The Rome Foundation trains psychologists and maintains a directory of gastrointestinal psychologists, but if someone can’t find a provider in their area, Hunt and Kinsinger recommend looking for a psychologist who’s trained in CBT and has experience treating chronic pain, panic disorders or anxiety.

Reducing sensations vs. reducing sensitivity

Not everyone is fully on board with CBT for IBS. One 2018 review study found “insufficient evidence to demonstrate the effectiveness of online CBT to manage mental and physical outcomes in gastrointestinal diseases” including IBS. A different 2018 review concluded that although psychological treatments for IBS appear to help in clinical trials, it’s unclear if they work in other settings and which treatments — such as CBT, mindfulness-based stress reduction and guided affective imagery — are most effective.

IBS is a complex problem, and some doctors prefer to integrate CBT with other treatments. But “by the time we see them,” Lackner says, “many of our patients have found that the medical treatments have not provided adequate symptom relief.”

Some IBS patients also find thetraditional approaches too hard to stick with. The most commonly prescribed treatment is a “low-FODMAP” diet, which requires giving up all dairy and legumes, plus many grains, fruits and vegetables. “Some trials show that even if the diet reduces or eliminates GI symptoms, it doesn’t improve quality of life because it’s crazy restrictive,” Lackner points out.

“With IBS, the nerve endings in the gut have become hypersensitized, and the brain magnifies those signals in the gut,” Hunt says. “The low-FODMAP diet tries to reduce the sensations, whereas CBT reduces the hypersensitivity. When you turn down the volume on the sensations, then you can eat whatever you want.”

Whether CBT helps with this brain-gut dysregulation, addresses distorted thinking and anxiety, or increases confidence in a person’s ability to manage gastrointestinal symptoms — or all of the above — it’s helped people with IBS resume parts of their life they’d put on hold.

Brittany Risher is a writer, editor and digital strategist specializing in health and lifestyle content. She's written for publications including Men's Health, Women's Health, Self and Yoga Journal.

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